Pages

December 28, 2013

Other people's stories

The holiday season is filled with stories.Growing up catholic one of the first stories
I heard was of the birth of Jesus. This story is much more than the birth of the
Savior, it is a story of new beginnings and sacrifice. In our family, this baby represents
goodness in mankind and the belief that we are all on earth for a bigger reason
than ourselves.

I do not mean this to be a post about Jesus, rather
a post about stories and how powerful they are as we develop our own personalities
and identities. For me, my story evolved to be the story of a Mom with three
children, one with Down syndrome. This grew to be bigger than me and became a
story of community, of advocating and of
activism. The book is half written at this time and I have no idea how it
will end, but I truly believe that if we follow our passions the ending will be
good.This holiday season I have been following a lot of
stories, some good and some not so good.I have read about other families impacted by disabilities, some good and
some not so good. I have read of the joy of having a child with Down syndrome,
I have learned of many families, just like ours who fight hard for their children
and are making a difference. It is a season
of thanks for the health of our children and the opportunities they will have
as they grow older. But it is the other stories that have been so meaningful
to me this season. The stories of people I had never met. Truthfully, I do not know these people’s
stories, I know they do not have children with Down syndrome, but I do know that
their work is making a huge impact on the lives of families graced by Down
syndrome across the world.At the TASH
conference I had the honor of meeting two of these people, Bob Schoen, the Executive
Director of Research Down Syndrome,
and Amy Allison the Executive Director of the Down
Syndrome Guild of Greater Kansas City.I have known both Bob and Amy through their work for
a few years. Bob contacted me when I first started sharing our story in 2009. Bob
was interested in learning more about families with Down syndrome as he began
his journey of raising funds to support research aimed at improving the
cognitive abilities of people with Down syndrome. He has been very successful
in his work and to date raised millions of dollars to support research projects.
I was honored we were able to share coffee while Alex and I were in Chicago.Amy I met through facebook , which is where I first
learned about her work with families in the Kansas City area. Recently
however, I have seen a number of posts about Just Like You – Down
Syndromea 14 minute film made in collaboration with the
Down Syndrome Guild of Great Kansas City that explores the life, hopes, challenges
and dreams of three kids living with Down syndrome. This film helps create an
awareness and acceptance of Down syndrome and was the recipient of the Positive
Images in the Media Award at the TASH Conference.

Amy was at the Conference to receive the award as
well as present the film the first evening. Alex and I were honored to introduce
ourselves to Amy and put a face to all her work.
As 2013 draws to a close, I take this opportunity to
thank the hundreds of people we have met through Down syndrome. Most of these
people I know through their stories or their work, many I have never met. But
to Bob and Amy, I am so glad to have met you in person, thank you for all you
do to make the world a better place for people with Down syndrome. If you have not liked
our page, it is a good way to stay on top of the ups and downs of college (and
inclusive education) for a person with a development/intellectual disability. I
have no idea what is going to happen....but I will share the good and the bad.
Please click on "The
Ordinary Life of an Extraordinary Girl" now.

1 comment:

What a beautiful video. Thanks so much for sharing and most of all thank you for sharing Alex and your family's story. I look forward to reading about all of Alex's trials and accomplishments. May she continue to grow into an independent, beautiful young woman who will always need her mother.